Learning from and about cancer (chronic lymphocytic leukemia or CLL) by Dr. Brian Koffman

What started as a personal journey of a doctor turned patient morphed into a way to share what’s universal in dealing with cancer, in my case a nasty leukemia (CLL), a failed transplant and a successful clinical trial. The telling of my journey has become a journey to teach about CLL, related blood issues and all cancers. Please visit our new website http://cllsociety.org for the latest news and information. Smart patients get smart care™. If you want to reach me, email bkoffmanMD@gmail.com

Saturday, February 28, 2009

Curly Hair and all

My hair is back, curly and gray and pretty thick. The picture with the T shirt was taken Oct 10, 2008. The more buff pix was earlier this week.

I am planning my first haircut in almost a year. I want to look spiffy for my trip to New York City next month.

In the past if I went a year without a snip, I would have had a pretty good start on a ponytail.

Thursday, February 26, 2009

A busy day on disability

Today, I reviewed and responded to a review of a Migraine CME program, counseled others by phone and email with CLL and/or facing transplants, critiqued medical illustrations for a book for the community on important health issues, collected, studied, and put in a spreadsheet my recent blood test and BM results, send paperwork in for teaching about a new drug for gout, helped make a diagnosis of someone 3,000 miles away, researched and discussed over the phone chest tubes with a former patient from his hospital bed, gently bugged my transplant doc for my engraftment and cytogenetic results, prepared a brief paper to help my radiologist tomorrow and provide him or her not only with my clinical history, but with a list with all the fax numbers of the 6 doctors waiting for my results, checked on the fasting requirements and Prep for my CT scan, did online CME on a new treatment for osteoporosis (because a friend is considering this new option), was asked about joining a medical advisory board, was questioned about my availability for teaching other docs, printed a certificate for all the CME I had done in the last 2 months, and typed up this list.

My flow cytometry found no monoclonal monsters hiding out. Able to detect a single bad boy in 10,000 by giving my marrow the 4th degree (4 color flow sees how a laser in scattered in 4 different ways explained in prior posts).

All good. All great. Order has been restored in the kingdom of my marrow.

I am so happy and grateful, and I am enjoying ever moment of this good news. Good news can be hard to find these days.

But I am trying not to overreact. In 2 days I have my CT, certainly a more sensitive test for relapse in my particular brand of CLL. And in many others too.

If my bone marrow biopsy had shown disease, the CT's only purpose would to measure the extent of the disease.

With this healthy domino in place, the odds are good that I will also get a clean CT. That tells me at worst my disease is deeply hidden and weakened. In this state, it is unlikely to cause me much trouble for a long time.

At best, I am cured , but don't know it.

If it shows evidence of relapse by finding enlarged nodes, my clean biopsy results tell me that I have time to plan my next move. The disease would only be in the nodes. I can live with that. I can mount the proper response.

CLL is enough of a roller coaster. If I want a long long long ride, I must be centered and balanced in both the highs and the lows.

Waiting for my bone marrow biopsy report

Is there any meaning in the lack of results? Surely he would rush the good news to me.

I can easily get lost in this crazy thinking. The Talmud teaches that prophecy has been taken from prophets and given to fools and children. However, it does later adds, with typical twisted Talmudic logic, the wise to the prophetic group.

I just emailed Dr. Forman to ask if there any results back yet from my bone marrow biopsy.

In case you are new to my blog, I have a a freight train of trouble waiting for news.

Still I say it is an act of courage and optimism to push for my results.

Would you do the same? Live with the not knowing, or move up the time that the envelope gets torn open?

Of course, as in the rest of life, despite what the devotees of THE SECRET believe, my writing the email will certainly have no effect on what the reply contains and in all likelihood on when it will arrive.

Yet I know that what I did was brave, but I was so nervous about doing it.

Sunday, February 22, 2009

Judy Blue Eyes Sings Leonard Cohen

This is a post I put on a Leonard Cohen fan blog.He has just announced his first NA tour in 15 years.

I just saw Judy Collins at the Coachhouse in San Juan Capistrano. Her soaring voice was better than on the albums from 4 decades ago. Her final encore was a song brought to her by a published Canadian poet in NYC. He said he couldn't sing or play and wasn't sure it was a song. She said he could do both and it sure was a song. She told him that she was going to record it the next day. The song she heard that night in 1966 in the village and played last night in Orange County was, of course, Suzanne. The rest is history. Last night was a recapitulation of that history. Towering. Immediate. I cried. For those who visited my blog http://bkoffman.blogspot.com/ know that LC's songs are the music echoing in my head and that has helped me reached this time 7 months post bone marrow transplant. And now I will get to see him in concert again. I am a lucky man.

Friday, February 20, 2009

Green tea and emails

I hope it's saving the day, because I quit more than 40 years of my drug of choice, coffee, to move to the gentler world of camelia sinensis.

There is not much data, but the Mayo clinic study shows that one particular tea extract may slow the disease progression for some patients.

Its benefits in Stage IV are anyone's guess. It can interfere with certain meds, but that is usually not a concern in CLL as those meds aren't often used to treat CLL.

I suspect that for a very few of us green tea may have very potent antileukemic effects, for some. its effects are mild, a few get worse, and for most, it doesn't hurt. Which is far better than some of the treatments out there.

Tea trees may have high pesticide residues, so I only drink organic green tea, preferably from Japan.

BTW, if you want to ask me a question, the best way is to email me at bkoffmanmd@gmail.com

A problem with the blog is that while I love your comments and welcome your questions, at least once you should email me so I can respond personally thereafter.

I can't give medical advice on the Internet, but I can help explain your options and suggest what you might want to discuss with your doctors.

Also I can recommend tea.

I drink three pots a day Organic Superior Sencha. The tea is steeped at precisely 176 degrees for 75 seconds.

It has a rounded full taste with very little astringency, an almost floral scent, and a hint of peach. I use the same leaves for all three pots, and the third is almost as good as the first.

Thursday, February 19, 2009

One less worry

My PSA was rechecked. It had risen too quickly, but not too high over the last year. Like many things in medicine, it is not just the absolute number, but the rate of rise that shapes the result.

The good news is that the result from this week has fallen compared to my last test on Dec 1, 2008, so prostrate cancer is off the table. So am I am. That is another place I would not want a biopsy. Rolling up a sleeve is one thing for the doctor, but dropping your drawers is quite another.

I guess it is only the gallons of green tea and my anxiety that keeps me returning to the men's room.

Secondary cancers are an important cause of morbidity and mortality in CLL. After skin cancer, prostrate cancer has a significantly higher attack rate in us guys. A transplant also increases the rate of secondary cancer.

Be still my beating heart

Yesterday I had another bone marrow biopsy. Not too bad. As is my habit, I walk afterward to minimize the after pains. This time it was next to the rain swollen streams of Eaton Canyon, near City of Hope. I listen as did Siddhartha for the laughter of the brook, loving the wildness of the place so close to the urbanity of Pasadena.

A great escape, but by bedtime, the anxious waiting for the results had begun.

This time I am not trying to stay calm about my chimerism results. Wouldn't it be great if I discovered that I had gone from 0% donor to, well, anything but 0%. That would be super and would make a pretty exciting story. When you're at zero, there is no concern that your level may have fallen in the latest test. It's going to be the same or better, so why worry.

Now my doctor and I are sniffing for the slightest hint of a relapse. The microscopy that can find 1 in 100 cancer cells may be back by the end of the week. The fancier flow cytometry that snoops out 1 in 10,000 may take a week longer. I am expecting good news. I feel well and honestly everyone tells me I look great.

This waiting part is always tough for me. You would think I would be an expert by now. The master of the here and now.

Instead I have the unhealthy tendency of trying to seize the future instead of the day. I started to ask Dr. Forman one of my what if questions to which he wisely said "Why have a speculative discussion today when we can a specific one in two weeks".

He's right of course, but it means waiting the two weeks.

Between now and then is my CT scan.

My wife and I found another wonderful diversion to rescue me today.

Heard my long time friends and legendary jazzmen, Luther Hughes, Tom Ranier, Paul Kreibich and Ron Eschete together as H.E.R.K. play some blow all your cares away and forget everything but the sweetness of this G-d given moment kind of music. All this plus I enjoyed a great meal with friends and drifted along with the beat.

Monday, February 16, 2009

Leonard Cohen

If I can't get tickets for his concert, then I can at least see his artwork.

If one is gifted by one of the muses, does it mean that one is blessed by the proximity of the others. Would Terpsichore and Erato, my votes as Lenny's benefactors, have side benefits as for his work as an illustrator.

Does prowess in one endeavor mean anything in an adjoining field? Maybe for a few true renaissance men and women, but for most of us, it is the same hard work we applied to the our first splash in the art or the sciences that lets us make similar waves in a new ocean.

At least that's my hopeful plan for my writing career.

By the way, I spent weeks at the same Zen Monastery where LC spent years. It was life changing for me.

See below:

When Leonard Cohen famously turned his back on the music industry in 1994, he retreated to a Zen monastery more than 6,000 feet above sea level on Mt. Baldy, in the San Gabriel Mountains near Claremont McKenna College. The musician took the name Jikan — meaning “the Silent One” — and devoted himself to an ascetic lifestyle and to the study of Rinzai Zen philosophy.

His five years in seclusion left a gaping lacuna in the musician’s eclectic career. Few people know why Cohen, born to a Jewish family in Montreal, ensconced himself in the monastery’s regimen of meditation and reflection. But “Drawing From the Heart,” a new exhibition of Cohen’s art at Claremont McKenna, throws light on that chapter of his life.

With more than 50 prints of Cohen’s paintings and drawings, the show is a broad survey of his work during the last 40 years. Recurring motifs include the female nude and self-portraits of the artist’s wizened face. But there are also cryptic, slyly comic references to his time on Mt. Baldy.

In one work, “Dear Roshi,” Cohen depicts a nude goddess ...

... alongside a brief letter to his elderly monastery instructor. In the letter, Cohen calls himself “a useless monk” and asks Roshi’s forgiveness for meeting (and presumably falling in love with) a woman.

“Leonard has a wry sense of humor. There’s a clarity and tremendous cutting humor in his work, even amidst the brokenness,” said Bob Faggen, the organizer of the show and a friend of Cohen.

Concurrent with the exhibition is the Southern California premiere of Philip Glass’ song cycle “Book of Longing,” based on Cohen’s 2006 volume of poetry. Glass will perform on keyboard with eight musicians and four singers. (The Feb. 25 through March 1 concerts are at the Garrison Theater, a few blocks from the art show at the Marian Miner Cook Athenaeum.)

Glass said the idea for the song cycle originated in a long conversation he had at Cohen’s L.A. home. The project was put on hold when Cohen entered the monastery but was revived after the publication of his book. “People don’t read poetry books chronologically, and I wanted to replicate that experience, as if the listener was subjected to random shuffling,” said Glass. The song cycle takes 22 poems and arranges them into thematic chapters dealing with love, Dharma, ballads and Cohen’s biography.

Like his visual art, Cohen’s poems make direct references to his reclusive Zen period. In the song “I Came Down From the Mountain,” he writes about his exodus from the monastery and his moment of self-realization: “I finally understood / I had no gift / for Spiritual Matters.”

Cohen, 74, was recently in Australia on a world tour and didn’t respond to requests for an interview. Apparently, Jikan the Silent One lives on.

Thursday, February 12, 2009

Enjoying the lull

It's been calm for awhile now, but I can feel the tension rising.

Being accustom to visiting the doctor twice a week, what the gradual transition to once a month consults has meant is that my CLL is less in my face, and the rest of my life is less tainted by my bad blood.

The trade off is that each visit now carries more oomph and I have some whoppers coming up in the next few weeks.

My bone marrow biopsy and my CT scan later this month will determine whether I am on a run away train heading for a redo transplant with all the dangerous and fears inherent in that life changing project.

Or will I simply start my slow reintegration back into the world of the normal. Or in my case, the new normal or maybe the near normal.

I actually have appointments with six different doctors in March including two in NYC to help me set my course. Do you think I will have enough data points?

It is sorta a big moment.

I already know the broad sweep of what will be said and done. It's the details that can kill you, and that's what I should have examined under the microscope by April Fool's Day.

It is a bright light in the murky world of CLL. She needs your help and your money.

Her whole article is well worth reading. What follows are my comments on why so few enroll when it so important:

Trials are tough because they are full of unknowns in a disease of unknowns. It is often easier and wiser to choose the devil you know, even if he only has a 20% chance or less of getting you to a CR.

Trials don't promise anything, and so they are often left to those who have no promises outside of the miracle discovery, the next Penicillin.

They also appeal of course who blindly follow their oncologists as they look to fill their rosters (and sometimes their pockets and their CVs). Most have their heart in the right place, but their enthusiasm while contagious, is not always justified for the project at hand.

And there are those who are simply doing the same treatment anyway and might as well join a trial to get a bit of a free ride.

Sad when you think that RCTs (randomized clinical trials) are our only hope (I repeat: our only hope) to find a path to a cure for this incurable disease.

Tuesday, February 10, 2009

Walk a mile wearing my pink ribbon

I found out in the last two days that two devout and caring friends have metastatic breast cancer.

Like a sucker punch to the gut it dropped me to my knees.

I want to scream: What kind of world is this? What kind of cruel jokester-creator would allow this outrage? I know that life isn't fair, but just how unfair is it?

Ponder for a moment all those well meaning email forwards and editorial cartoons of G-d's hands safely guiding the United flight 1549 for its gentle life saving bath in the Hudson. Mustn't those same souls who saw divine intervention at work in the "miracle on the Hudson" also show that same heavenly hands turning off all the " can't we all get along" genetic controls in the malignant cells in my friends' breast, so that their cancer cells can blindly plunder the riches of the rest of their bodies? If we give G-d all the credit, she must also shoulder the blame.

Will the ghost of Viktor Frankel please help me with some meaning here? (If you have not already read his book, Man's Search for Meaning, drop everything and read it this week. It might change your life).

Discussions of theodicy (theology that addresses moral evil in the world) are the cost of doing business in my line of work. It doesn't make it hurt any less.

About a quarter million American find out they have breast cancer every year. Thankfully for most it is not in their bones when they get the unwanted diagnosis. Despite its horrors, it is almost always a winnable battle.

For comparison, only 15,000 are told by their doctors the usually surprising news that they have the "gentle cancer" CLL. They drop the bomb later in the conversation that it is incurable.

With breast cancer, decisions come fast and furious. Time is not your friend.

With my leukemia, the opposite is true. We have time to ponder our next move and our mortality.

Monday, February 9, 2009

The Phantom by Mike Hill

The 92 " H by 148" W x 37" D two ton steel and granite sculpture by Mike Hill was scheduled to be installed tomorrow. It has been in storage for years as we wandered from home to home.

Before it could be installed, plants were moved, the ground was dug out, leveled and compressed with DG (decomposed granite) and 2 x 4s sunk to ground level to mark off the space.

None of this could be done while I was immunocompromised as the turned up soil would have exposed my then hapless immune system to normally innocuous spores and and bacteria. My warm nutrient rich blood stream would have been a fabulous home for these microbes, entering through my lungs and onto the capillaries. Without the white cells guarding the gates, they would be welcomed into a feeding frenzy at my expense.

But now the time is opportune. My counts are good, but not the weather. Unfortunately, normally sunny SoCal isn't, so we need to wait until the ground is dry, before I get to see this art rising out of my front yard.

This strong piece is a monument to my future. It boldly thrusts out the message that I plan to be around long term to enjoy its sweep and grace every time I walk in and out my front door.

Its real thrust is that while I must prepare for any twist of fate, I am living big. I am writing. I am teaching. I am planning my return to work.

Unless my docs tell me otherwise.

Should I need a redo transplant or not, I can't let that stop me. I am not good with pressing the pause button.

Like Woody Allen's shark, I keep moving forward. Look closely and you'll see a similar hunger in my eyes as in those of that prehistoric predator, but it's truth, not a meal that I am chasing.

Saturday, February 7, 2009

"Those who cling to life die, and those who defy death live." Uesugi Kenshin paraphrasing Sun Tzu

Why this Japanese warrior's take on the Chinese classic text, Sun Tzu's Art of War?

Surely I am not turning Japanese? It is true that my donor was from Asia, but from Israel in the near, not the far east.

Talking about the land of Sinai, didn't I earlier preach from Deuteronomy 30:19 to choose life so that you and your descendants will live?

Why now is this ancient Chinese treatise on the conduct of war being paraded in these pages? Couldn't I find modern writings that were more humane than this ruthless text that makes the advice dispensed in the The Prince look like atext book on etiquette? There surely must have been better choices at the library for me to read this weekend. Couldn't I find anything new on the twin passions that inform my life: ice hockey and Zen?

To justify my scrappy choice, I won't march out my old battle metaphors again about how fighting cancer is a war to the death.

Instead I will say that sometimes the only way to live is to risk it all. With my brand of leukemia, had I not been prepared to face the risk of dying from a early and by existing guidelines, an unneeded or at best premature transplant, I would have been left with the creepy certitude that my cancer would kill me, sometime. Without the transplant, I may have been able to slow the fall of the sands in the timer. I might even have been able to reset it. With the transplant, my goal from the get go was to smash the bloody hourglass.

My goal was to choose life.

Sun Tzu and Moses may be on the same page after all.

Even the transplant tactics matches the pagan's dictum to engage the enemy with blunt force and defeat them cunning. By cunning the war master means planting false information, corrupting their leadership, and infiltrating their forces.

Surely the heavy duty chemo conditioning is that blunt weapon deployed to bring the cancer to its knees but we all know that it would eventually rise again stronger and more determined without the death blow delivered by the deceit of sending in the new immune police, my new stem cells when the cancer was at its weakest.

Those kind of fighting words and strategic counsel are nowhere to be found in the bible.

So I guess you need both kinds of text to live.

Like in hockey, where you need the enforcer to protect your elite players. For Oilers' and Kings' fan think McSorley and Gretzky.

Switching gears, I am just back from the writers' conference. Wonderful. Despite being exposed to some gorgeous writing, and missing my exit as I got lost in Proust on my way home, I promise to keep my writing here unfiltered and rough.

At the conference, I was pumped up by the positive feedback. I now believe that I can be a published writer.

Thursday, February 5, 2009

Balls in the air

Tomorrow I don the attire of an author at the San Diego State University Writers' Conference. I enter a world full of a diverse assortment of editors and agents and publishers and publicists. They each have their focused skills and most I believe love to read. I am eager to learn from them and to mix and match with this new crowd.

I figure if I can get along with surgeons, making fast friends with this bunch should be easy.

Even the required garb isn't much of a stretch. My patients and students will tell you I tend to the tailoring of the professorial class: jeans and a tweedy jacket. I guess it is because I love to teach and dress the part. I tell my medical students that the straighter you dress, the crazier you can act. I learned that lesson in the 60s, when my long hair in medical school necessitated the most conventional behavior on my part.

While I still can't see patients, I can write. I have just finished two writing projects (a report for my medical group on incentives for doctors doing the right thing, and a one page introduction to my book). Yesterday I took on a medical education program on migraines that's due in three weeks. It normally would take two to three months to complete. With the help of a great colleague and cowriter, I will help develop content for 90 minutes of lecturing. At the same time, I will write the story line and dialogue of two fictional migraine sufferers, essentially a short medical drama to illustrate the teaching points - that is happily resolved in under five minutes.

Don't we all want to be in a place where all problems are wrapped up by the end of the show, or at worst, by the end of the season?

The text and powerpoint need to be to the printers in three weeks, and the video will be shot a week later. With show time in Manhattan only a few weeks after that, my colleague and I are also called to be the co-presenters for the first gig where I have quickly sandwiched my lecture between appointments with Drs. Rai and Furman. While on the east coast, I might as well consult my CLL gurus. Let's not forget that my number one enemy has not waved the white flag quite yet.

After that, we should have the time to train other speakers who will then present to over 4,000 medical professionals in 11 cities between March and June. Hopefully, these docs will stay awake to see my work, enjoy the learning process, and most importantly do a better job of caring for their patients because they attended these conference.

For that I am called a content provider, and a lecturer. I love it.

But, if I want to be called an author, and I'd be lying if I said I didn't have that ambition, then I need to write my book. I need to work with a team to get it published and read. I am not so cocky to believe that my words can change the world, but I am not so immodest to deny that they might change individual lives. I will even write in my blog on the writing (would that be meta-writing?)

I wade into these new waters tomorrow.

I may not have the worldly wit or wildness or wisdom of my guiding light, Tom Robbins, but I do have his willingness to not always accept the conventional perception of what is out there, especially if what is perceived stinks. That is how I approached my battles with leukemia.

Monday, February 2, 2009

Meditation

I am getting ready. Soon the ground will shift again. Or the rains will start. Or not.

Soon I should be returning to work, seeing if I have what it takes to be a writer, and opening my hood while the doctors probe my marrow and gut to see if I need a third oil change and new set of filters.

Like Noah and the flood, will I need to be wiped clean again with another transplant and given a chance to start again?

Rabbi Alan Lew, may his memory be a blessing, just died last month. The title of one of his books tells it all: Be still and get going.

I am reading The Art of War by Sun Tzu again. Maybe the answer is there. Then Proust is on my list. Not sure why. I am attending lectures on Jewish mysticism and meditation. I am searching for a way to probe the unknowns.

This weekend is the Writer's Conference in San Diego where it will be show time with several agents and publishers. And you thought I was brave having a transplant. This is scary.

About Me

BkoffmanMD@gmail.com
A family doc and husband of 1 and father of 4 and grandfather of 3 who loves his family and his work. I live with no TV and no microwave, but wouldn't last a minute without friends, art, music, books and the beach. Hockey, good jokes and exotic travel are pretty important too. Writing, Talmud and Zen give meaning to my life. My diet is organic vegan, often raw. I hope the blog makes the load lighter and the path both safer and more fun for those who read it or are going to similar places. I want to help. I crave your comments. If you are new to the blog, check out the portrait my son Will painted (it is the first post), and my very first text post.